Rae Lewis-Thornton: A Diva Talks About the Cost of Living With HIV (Video)

Now, people see me on TV, they see me doing these things, and they're like, "Well, why can't you go to work, girl? Get back out there and work!" The fact of the matter is that I never know. First of all, I have chronic fatigue. There are some days I wake up feeling like I haven't even been asleep. And then I never know when something's going to happen.

Hypothetically, if you've got a good T-cell count and a great viral load, then you shouldn't have any infections; you shouldn't have anything serious. But the reality is that AIDS is not that simple.

Especially when you've been living with it for a really long time.

I've been living with it for a really long time. So my immune system is zapped out. I got a boost from the regimen that I'm on, but the part of my immune system that's died is dead, and it will never be revived again.

Advertisement

I just did 30 days of IV meds, twice a day, two hours a day. How can you keep a job in that regard? And prior to that I did six months of IV meds where I would do it once a week. The first three days of which I'm pretty much zapped out. Then I bounce back. And the last three days, by the time I bounce back, I have to go back in to get an IV treatment to treat an infection.

It's been the biggest loss for me, financially. It's been one of the biggest losses. If I had to pinpoint a couple of things that AIDS has really affected, it would be my career and, thus, my financial situation. I mean, you have to understand the people who were my peers: [Veteran Democratic strategist] Donna Brazile, for example, was my peer. So, my career, and from that, the loss of my finances.

And then my physical appearance, which sounds shallow to some people, but for people with AIDS, you get it. My lipodystrophy, it distorted how I looked. And I thought I looked just fine.

And so those have been my two greatest [losses].

It's really hard. Even for people that don't speak for a living. I hear it from women in the clinic: They don't get enough disability to actually even get public aid.

"Do you know what it's like to go to this agency that's supposed to help you, and you know your lights are getting ready to be turned off, and they say to you, 'Your disability check is $30 too much'?"

I remember two years ago, when I hit rock bottom. And girl, I pulled myself together and went down to CEDA (Community and Economic Development Association of Cook County): "I'm going to get my light bill paid for!" My disability was $30 too much to qualify to get my light bill paid. My lights were turned off. The only way we got my lights back on was, my doctor sent in a letter of emergency. That was a 30-day reprieve. My heat is paid in my electricity, so the bills are higher in Chicago in the wintertime. I had to figure out within those 30 days how to get that $400 to pay.

Do you know what it's like to go to this agency that's supposed to help you, and you know your lights are getting ready to be turned off, and they say to you, "Your disability check is $30 too much"?

And, wait. It took a lot for me to go there. Because proud people never ask. We try to figure it out on our own.

How are you doing now, financially?

It's still rough for me financially. Honestly, I went from five or six speaking engagements a month to five or six speaking engagements a year.

I haven't had a speaking engagement in three months. So it's been hard. But what it's also done, honestly, is it's forced me to stretch the money a little bit longer. It's taught me that I don't need as much as I think I need.

And I have friends. My girlfriend Markeeda bought Peapod for the last three months. If she had not bought Peapod, I would not have groceries. So I'm grateful for what support systems I do have.

I continue to do the work, even though I'm not getting paid for the work.

Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.

(Please note: Your name and comment will be public, and may even show up in Internet search results. Be careful when providing personal information! Beforeadding your comment, please read TheBody.com's Comment Policy.)

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.